Guidance

NHS population screening: working with minority or hard to reach groups

Published 1 January 2013

This guidance was withdrawn on 25 April 2019

This guidance has been replaced by Equitable access to screening: statutory duties under Equality Act.

NHS screening programmes offer screening services to all people eligible for screening.

This publication sets out tips for screening professionals to use in overcoming general barriers to accessing screening.

It includes advice for providing services for hard to reach and minority groups as defined by the 2010 Equality Act.

We have attempted to provide advice for those groups that most screening services are likely to encounter.

1. General

Lay out invitation letters in a clear, concise and easy-to-read format to simplify access for all individuals and groups. You can use a specialist software such as Hemmingway to check the reading age of the content.

Where possible, display information in pictures on information leaflets, invitation letters and promotional material.

Make all reasonable adjustments to venues for screening tests: consider the physical space, access to the venue and layout of the venue.

All staff should be aware of the legal duty to offer equitable access to screening. Staff need to know that how they carry out their role can alter how people view screening services. It can affect an individual’s willingness to attend now and in the future.

Screening staff should complete relevant training in:

• equality and diversity
• customer care
• communication skills
• disability awareness

Do not make assumptions and do not be afraid to ask.

Have longer appointments available for those who require them.

Work with colleagues in Public Health to identify possible data that will help plan the structure of screening appointments.

Have information on local transport options available upon request.

Ensure that services are clearly signposted from all major access and entrance points to the screening venue.

Set up options other than telephone response for people making, altering or enquiring about appointments or other aspects of screening.

Make sure an automated telephone system is not the only form of telephone system available. In automated systems, include an early option for people to speak to someone when calling to make enquiries.

Take telephone calls in a quiet space; background noise can make hearing and understanding information very difficult for individuals.

Give clear and concise information on what individuals should expect from their appointment.

Ensure someone is available in waiting areas, and where screening is carried out, to answer questions and help individuals who look concerned or confused.

Collect information on any individual’s special needs, such as:

• need for longer appointment slots
• if a carer is in attendance
• when a translator is needed

Put in place a system that routinely prepares for these requirements each time the individual attends for screening.

If you are unsure why a certain section of your local population is not attending for screening, contact relevant community groups and ask them for advice on how to improve attendance in future.

2. Individuals who have hearing problems or are deaf

Minicom or other text based forms of communication should be available for people to respond to screening service invitations.

Many people who are deaf refer to English as their second language and British Sign Language as their first language. Make screening invitations and correspondence clear and concise, focusing on the specific screening test, not any possible subsequent diagnostic tests.

Ensure training is available on disability awareness for staff.

Work with staff to ensure they are comfortable communicating with people who have hearing problems during the screening process.

3. Individuals who are partially sighted or blind

Staff should have access to disability awareness training.

Ensure all information is available in large print and braille.

Make use of audio marketing opportunities such as social media channels to inform individuals about screening.

Ensure the screening venue is appropriately signposted and is easily accessible.

Clearly indicate contact phone numbers for the screening service on the invitation.

During screening, staff need to communicate what they are doing, and why they are doing it, at all times.

The majority of blind and partially sighted people are over the age of 65. Sight loss, along with hearing loss and some other disabilities, is for many people related to ageing. Services need to bear this in mind in relation to accessing facilities.

Introduce an automated or staffed helpline providing information about the screening service, to supply information on directions, accessibility and transport options to reach the service.

Bowel cancer screening: clearly identify testing kits sent in the post, making sure they are easy for people to use. Accompany all kits with large print or braille instructions which include website links with audio information on taking the test.

4. Individuals who have a physical disability

Train all staff in disability awareness.

Make sure disabled car parking spaces are available near the service and provide options for the booking of adapted transportation if necessary.

Offer screening in a suitable venue with reasonable adaptions. If you cannot adapt your site, then offer the individual an appointment at the next closest accessible screening venue to their address. Put an automatic process in place for whenever this need is identified or requested.

Clearly signpost screening services from the bus stop and car park, if the venue is a large hospital or health centre. Make sure the route is suitable for people with mobility problems, and all reasonable adjustments are in place. Provision of handrails is often needed.

Review the most common routes travelled to the screening service and identify any possible issues on route, making reasonable adaptations where possible.

Bowel screening: clearly identify testing kits sent in the post, making sure they are easy for people to use.

Breast screening: due to the limited space in mobile units, it is more appropriate to offer breast screening to wheelchair users in a fixed-venue clinic.

Do not make assumptions about individuals. Do not make judgements about what a person can and cannot do based on physical disability. Talk to the individual and find out what support, if any, they require. Show respect and treat people with dignity as part of everyday practice.

5. People from ethnic minority backgrounds who have no or poor understanding of the English language

Communicate using pictures where possible, both in letters and as a method of interaction at screening venues.

Ensure translated letters are available in the most prevalent languages (besides English) spoken in the local area.

When offering documents in different languages, make sure to explain this in the target language and not only in English. Use links and networks within each community group to promote screening.

Communicate with public health colleagues to gain information related to the local population and community networks. Seek promotional opportunities through services, such as local authority housing services, that already have links with the individual, group or community.

Determine possibility of language issues prior to any appointment, and ensure that these problems are appropriately addressed. Ensure access to translation services is available.

Limit background noise in offices where you are making phone calls or talking to members of the public.

6. Travelling communities

6.1 Strategic level tips

Consider working with clinical commissioning groups, the screening and immunisation lead working in the NHS England sub-region and Local

Authorities to ensure appropriate measures are in place within General Practice to allow registration by Traveller families.

It is important that practices understand the importance of enabling travelling communities to register with them and that they can evidence that an inclusion registration policy is in place.

Work with public health colleagues, local authorities and community groups to identify Traveller communities within your area and facilitate engagement with the Traveller community around health service and screening service access.

6.2 Practical tips

Use community networks with links to the Gypsy or Traveller communities to build trust, disseminate information, and work with them on how to frame your message.

Prior engagement with groups of Travellers and Gypsies in your area is vital to increase uptake. You need to explain what the screening programme is and why they have been invited. An invitation alone is unlikely to have much impact on uptake rates.

Create invitations that are clear, concise, and highlight specifically the main benefits and messages of screening, along with the potential risks of the screened-for diseases.

Levels of literacy are low within the Travelling community; create communication material which is largely pictorial or aimed at the reading age of 10 years to help your outreach.

Carefully select pictorial information: any pictures with any genitalia or large areas of naked flesh are potentially highly offensive. If possible, try to send information via text message regarding their invitation or appointment.

Ensure that information given is culturally appropriate.

Gypsies and Travellers will fear hostility or prejudice from healthcare staff because of lack knowledge about their beliefs and culture. Offer basic training for receptionists and healthcare staff in Traveller and Gypsy culture to significantly improve communication and increase service provision.

The Travelling and Gypsy community rely heavily upon word of mouth communication. A single negative incident with a screening service could alienate the whole local community. It is vital that screening service staff treat the Travelling and Gypsy community with respect right through the screening pathway.

The Gypsy and Travelling community have very set views on gender roles. If they believe that a male staff member will have anything to do with a breast or cervical screen, female members of the community will not be allowed to attend. Ensure that female staff are available to perform screening and to discuss the results. Communicate this very clearly to the community.

Put information regarding the risks of certain diseases across in stark terms if necessary.

7. Lesbian, gay and bisexual individuals

Ensure that all staff make lesbian women aware that cervical screening is necessary.

Create information leaflets for lesbian women, explaining why they still need screening for cervical cancer.

Implement staff training in communication and the use of non hetero-normative questioning.

Be aware that people from the transgender community also have a sexual orientation:

• a transgender male may identify themselves as a gay man
• a transgender female may identify themselves as a lesbian

8. Transgender individuals

Limited information is available in relation to this client group and screening services. The most obvious issues are around gender-specific screening programmes. Men with a female history who still retain a cervix still require a cervical screening test.

The invitation system used for cervical screening is set up automatically to only invite the correct eligible patients. Thus, males are not routinely included in the lists. Therefore, the GP needs to manage the invitation process, liaise with the lab to process the sample, and communicate the results to the patient afterwards.

Females with a male history are still at an increased risk of abdominal aortic aneurysm (AAA) and require an invitation to the AAA screening test.

Women with a male history or men with a female history that have developed breast tissue still need breast screening. Local breast screening services should be discreet, and make sure to include individuals in the right patient group for invitations.

It is important that information is available for both staff and patients about screening and the transgender population. A commonly held perception is that transgender individuals no longer require screening; this is not necessarily true and can lead to much confusion.

The main issue for people within the transgender group is fear of negative attitudes from screening staff. The main tip for services is to ensure all staff have adequate training. It is also important to make sure that staff uses the right pronoun when talking to an individual. If in doubt, ask the individual how they prefer to be addressed.

8.1 Transgender terminology

None of these terms are definitive. Terminology used within the Trans community is organic. “Trans” used alone can be confused with individuals identifying as only either “Trans” male or female. This term may eliminate those who identify with the spectrum in-between.

Agender: to identify as non-gendered.

Binding: a method used to conceal the breasts.

Lower Surgery: refers to gender affirmation surgery of the genitals.

Cisgender/Cis translates to feeling comfortable with the gender identity that society thinks is suitable to the sex assigned at birth.

Cross-sex hormones: estrogens and androgens used to balance gender. Used to induce or maintain the physical and psychological characteristics of the sex that matches a person’s gender identity.

Disclosure: to be out as trans

FTM: female to male identified.

Gender: a performance, an expression of self through presentation.

Gender affirmation surgery: surgery carried out to confirm a person’s gender identity.

Gender binary: a system that divides sex and gender into either man/male or woman/female. This system excludes people who do not fit into these groups.

Gender dysphoria: a medical term that describes the negative feelings associated with the incongruence of gender identity and sex.

Gender Identity: a person’s internal sense of being.

Genderqueer: people who may not identify as entirely male or female, and who dislike the binary system as a way to view gender.

GIC: gender identity clinic

Intersex: a medical term for a person who develops primary or secondary sex characteristics of both female and male.

MTF: male to female identified.

Trans: an all-inclusive term that can include many interpretations of sex and gender.

Trans man: a female to male identified person who may be at any stage of the transition process.

Trans woman: a male to female identified person who may be at any stage of the transition process.

Transgender: an umbrella term used for all types of people who identify outside the gender binary.

Transition: the process of crossing gender; this can include associated social, physical and legal procedures.

Transsexual: a medical term for a person who identifies with a gender or sex that is different to the one assigned at birth.

Top surgery/chest surgery: refers to gender affirmation surgery to remove breasts.